We have had a long day! Praise God that we made it here safe and sound!
Brayton LOVED flying! His face when we first took off was priceless! He was all grins and his eyes lit up! He has been a trooper! On our 2nd flight, he fell asleep and slept until we landed! He has had an exciting day! As I type, he is playing with the hotel's phone and running all over the place!
Cincinnati Children's Hospital is like a city in itself! Luckily, we found where we needed to go for tomorrow! It didn't seem too complicated!
It is 5:00 here and we are all in our rooms resting! Getting up at 2 am is finally taking its toll! We are staying in tonight and hopefully we will be recharged by morning!
I will try to blog every night to keep everyone updated! We love you all so much and appreciate the thoughts and prayers!
Monday, April 29, 2013
Friday, April 26, 2013
Our Itinerary for Cincinnati!
In a few days, we will be flying to Cincinnati, Ohio!!! Yay!!! We are excited and anxious! My mom, Mr. Earl, and Mrs. Jean will all be traveling with Luke, Brayton, and me! Brayton will be seeing the Aerodigestive team!
Information on the Aerodigestive Team:
http://www.cincinnatichildrens.org/service/a/aerodigestive/default/
Our schedule is as follows:
Monday: We will fly out bright and early! We will get to Cincinnati before lunch! Luke and I plan to find the hospital and figure out where all of the appointments are!
Tuesday: Brayton has an appointment at 10:30 for an anesthesia consult! He also has to have a chest x-ray then we have a pulmonologist (lung doctor) appointment at 2:15!
Wednesday: Brayton will go under anesthesia for 2 scopes at 10:30am! One with the pulmonologist (lung doctor) and one with ENT (ear, nose, throat doctor). The ENT doing the scope is the famous Dr. Cotton who is world renown! Brayton will be admitted to the hospital because while he is under, the gastrologist (stomach doctor) will put down a 24 hour impedance probe to check for acid reflux! We will spend Wednesday night in the hospital!
Dr. Cotton's biography: http://www.cincinnatichildrens.org/bio/c/robin-cotton/
Thursday: We will be discharged and have an appointment at 8:00am with ENT to do a swallow study test.
Friday: We will all fly back to good ol' Bogue Chitto!!! :)
Thank you all for all of the prayers! God led us here and I know He has a plan! Love you all!
God, please heal Brayton's airway perfectly and completely!
Information on the Aerodigestive Team:
http://www.cincinnatichildrens.org/service/a/aerodigestive/default/
Our schedule is as follows:
Monday: We will fly out bright and early! We will get to Cincinnati before lunch! Luke and I plan to find the hospital and figure out where all of the appointments are!
Tuesday: Brayton has an appointment at 10:30 for an anesthesia consult! He also has to have a chest x-ray then we have a pulmonologist (lung doctor) appointment at 2:15!
Wednesday: Brayton will go under anesthesia for 2 scopes at 10:30am! One with the pulmonologist (lung doctor) and one with ENT (ear, nose, throat doctor). The ENT doing the scope is the famous Dr. Cotton who is world renown! Brayton will be admitted to the hospital because while he is under, the gastrologist (stomach doctor) will put down a 24 hour impedance probe to check for acid reflux! We will spend Wednesday night in the hospital!
Dr. Cotton's biography: http://www.cincinnatichildrens.org/bio/c/robin-cotton/
Thursday: We will be discharged and have an appointment at 8:00am with ENT to do a swallow study test.
Friday: We will all fly back to good ol' Bogue Chitto!!! :)
Thank you all for all of the prayers! God led us here and I know He has a plan! Love you all!
God, please heal Brayton's airway perfectly and completely!
Tuesday, March 19, 2013
Cincinnati Trip: April 29- May 3
Brayton has fully recovered from the terrible stomach bug that prevented us from going to Cincinnati! He is in full force and into EVERYTHING! I am loving every moment of it!
We have a new date for Cincinnati now! We will leave Monday, April 29th and return Friday, May 3rd! An itenerary is being sent, but according to the scheduler who I talked to, we will have ALL of our clinic appointments on Tuesday, some in the morning and some in the afternoon. Wednesday morning will be the scope. According to other trach moms, after the scope, the doctors will meet with us to discuss their findings and give a plan on what we will have to do. We will have to spend the night at the hospital that night because they will also do a 24 hour probe to test for reflux. Thursday morning, we will be finished! My wonderful sources told me that the following week, the aerodigestive team will meet to discuss Brayton's case and will call me to schedule other appointments!
So the countdown begins again! Only a few more weeks and we will be Cincy bound!
Pray that Brayton stays healthy and that nerves are calm! (I had a nightmare last night that we missed the plane and did not have all of Brayton's necessary equiptment with us!)
God is in control! We will not be shaken!
We have a new date for Cincinnati now! We will leave Monday, April 29th and return Friday, May 3rd! An itenerary is being sent, but according to the scheduler who I talked to, we will have ALL of our clinic appointments on Tuesday, some in the morning and some in the afternoon. Wednesday morning will be the scope. According to other trach moms, after the scope, the doctors will meet with us to discuss their findings and give a plan on what we will have to do. We will have to spend the night at the hospital that night because they will also do a 24 hour probe to test for reflux. Thursday morning, we will be finished! My wonderful sources told me that the following week, the aerodigestive team will meet to discuss Brayton's case and will call me to schedule other appointments!
So the countdown begins again! Only a few more weeks and we will be Cincy bound!
Pray that Brayton stays healthy and that nerves are calm! (I had a nightmare last night that we missed the plane and did not have all of Brayton's necessary equiptment with us!)
God is in control! We will not be shaken!
Friday, March 8, 2013
Learning How to Hit the Curve Ball of Life...
Well, life has thrown us yet another curve ball! I should have known it would not be this easy...
Brayton woke up this morning with fever and vomitting. We went to the doctor and found out that he has a virus. We called Cincy and they said it was probably best if we rescheduled the trip because it would be bad if we went and had to cancel everything. Also, since Brayton has to go under anesthesia, we do not want him to be weak at all. So, the morning has been spent cancelling flights, rental cars, hotel rooms, and rescheduling appointments! At the moment, we are looking to go at the end of May, beginning of June. And the appointment will be made either later today or next week.
Needless to say, we are all very bummed out! I told my mom that I am sure there is a reason even if I can not see the bigger picture right now: maybe something would have gone wrong on the trip or maybe another kid needs the appointment more than us and now there is an opening for him! Regardless, God has something planned.
So, keep Brayton prayed up as we fight this virus and start over with trip planning!
"Even If" by Kutless
http://youtu.be/HqOkZiOb9u0
Lord we know Your ways are not our ways
So we set our faith in who You are
And even though You reign high above us
You tenderly love us
We know Your heart
We rest in who You are
Even if the healing doesn't come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn't come
You're still the Great and Mighty One
We trust You always
You're working all things for our good
We'll sing Your praise
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn't come
Even if the healing doesn't come
Brayton woke up this morning with fever and vomitting. We went to the doctor and found out that he has a virus. We called Cincy and they said it was probably best if we rescheduled the trip because it would be bad if we went and had to cancel everything. Also, since Brayton has to go under anesthesia, we do not want him to be weak at all. So, the morning has been spent cancelling flights, rental cars, hotel rooms, and rescheduling appointments! At the moment, we are looking to go at the end of May, beginning of June. And the appointment will be made either later today or next week.
Needless to say, we are all very bummed out! I told my mom that I am sure there is a reason even if I can not see the bigger picture right now: maybe something would have gone wrong on the trip or maybe another kid needs the appointment more than us and now there is an opening for him! Regardless, God has something planned.
So, keep Brayton prayed up as we fight this virus and start over with trip planning!
"Even If" by Kutless
http://youtu.be/HqOkZiOb9u0
Lord we know Your ways are not our ways
So we set our faith in who You are
And even though You reign high above us
You tenderly love us
We know Your heart
We rest in who You are
Even if the healing doesn't come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn't come
You're still the Great and Mighty One
We trust You always
You're working all things for our good
We'll sing Your praise
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn't come
Even if the healing doesn't come
Wednesday, March 6, 2013
Cincinnati, here we come!
In a few days, we will be Cincinnati bound! We will be seeing the Aerodigestive team at Cincinnati Children's Hospital. The Aerodigestive team is internationally known for their approach to caring for children with complex airway, pulmonary, upper digestive tract, sleep and feeding disorders. They are one of the best centers in the world at meeting unique needs in an effective, time-efficient manner. We will see several different specialists and they will all come together to do a scope so Brayton will only go under anesthesia once! Click here for Information on the Aerodigestive Team
I am always amazed at how God works things out. I found out about these doctors through a group on Facebook (Moms of Trach Babies). I e-mailed the head of the team and within 24 hours, he e-mailed me back! Several months later, we are heading to meet these doctors. Definately a God thing!
I have written on here about running in to people who have had trachs and are fine now. God gives these people to me at just the right time. Just this past Thursday, Mom, Brayton, and I were eating at Logan's. With the upcoming trip, we were already getting anxious and out of the blue our waitress told us not to be worried or get discouraged because her step brother had a trach until he was 6 and when it came out, he could talk just fine! Did she know we were worried about an upcoming trip? Nope! Did she know Brayton's story? Nope! She was just someone who saw Brayton dancing and eating rolls. She did not know us or what we have been through or will go through; and yet, she calmed my nerves. WOW! Our God is an awesome God!
Keep us in your prayers! God is going to do great things in His time! We love you all!
God, please heal Brayton's airway perfectly and completely!
I am always amazed at how God works things out. I found out about these doctors through a group on Facebook (Moms of Trach Babies). I e-mailed the head of the team and within 24 hours, he e-mailed me back! Several months later, we are heading to meet these doctors. Definately a God thing!
I have written on here about running in to people who have had trachs and are fine now. God gives these people to me at just the right time. Just this past Thursday, Mom, Brayton, and I were eating at Logan's. With the upcoming trip, we were already getting anxious and out of the blue our waitress told us not to be worried or get discouraged because her step brother had a trach until he was 6 and when it came out, he could talk just fine! Did she know we were worried about an upcoming trip? Nope! Did she know Brayton's story? Nope! She was just someone who saw Brayton dancing and eating rolls. She did not know us or what we have been through or will go through; and yet, she calmed my nerves. WOW! Our God is an awesome God!
Keep us in your prayers! God is going to do great things in His time! We love you all!
God, please heal Brayton's airway perfectly and completely!
Friday, November 30, 2012
Brayton's Prayer
I just typed a really long blog and I lost it! So here it goes again:
A lot has happended since my last post! First, we reached our 1 year mark for having the tracheostomy. It was a day full of thoughts about all of the laughs and cries that I have missed out on, and also thoughts on how blessed I am to be able to see Brayton's smiling face every day!
In November, we went for a scope. There was a little bit of improvement!!! Words can't express how good those words were to hear!
We go back on Dec. 11 for another scope. I told my mom a few days ago that I wanted to write a short rhyming prayer to get everyone to pray. The only thing that kept coming back to my mind was a prayer I prayed while Brayton was in the hospital getting the trach and it doesn't rhyme at all. The prayer was, "God, please heal Brayton's airway perfectly and completly!" Such a simple little prayer but with so much power!
I have passed this prayer around and so have others. The more I think about the prayer itself, the more I realize that it truly is the perfect prayer for my miracle! You see, Brayton, like the prayer, is little (weighing in at a whoppin' 19lbs after a stomach bug this past week) and simple. He is easily amused, he smiles at anything and he is simply a happy baby boy! Yet the most AMAZING thing about Brayton to me is the POWER he has! He has the power to make me or anyone else for that matter do pretty much anything he wants! Haha. But he also has the power of God pouring out of him at every point in his life. In his short 16 months, God has worked wonders through him. My son is God's messenger. Lives have been touched. People we have never met, send me facebook messages telling me how he has touched them. It is AMAZING!
So, I ask everyone to please, please pray what I have decided to call "Brayton's prayer"...simple words with A LOT of power! I KNOW that God has something amazing in store and that only HE can heal my sweet man! All it take is "a little improvement" at a time!
"GOD, PLEASE HEAL BRAYTON'S AIRWAY PERFECTLY AND COMPLETELY!"
A lot has happended since my last post! First, we reached our 1 year mark for having the tracheostomy. It was a day full of thoughts about all of the laughs and cries that I have missed out on, and also thoughts on how blessed I am to be able to see Brayton's smiling face every day!
In November, we went for a scope. There was a little bit of improvement!!! Words can't express how good those words were to hear!
We go back on Dec. 11 for another scope. I told my mom a few days ago that I wanted to write a short rhyming prayer to get everyone to pray. The only thing that kept coming back to my mind was a prayer I prayed while Brayton was in the hospital getting the trach and it doesn't rhyme at all. The prayer was, "God, please heal Brayton's airway perfectly and completly!" Such a simple little prayer but with so much power!
I have passed this prayer around and so have others. The more I think about the prayer itself, the more I realize that it truly is the perfect prayer for my miracle! You see, Brayton, like the prayer, is little (weighing in at a whoppin' 19lbs after a stomach bug this past week) and simple. He is easily amused, he smiles at anything and he is simply a happy baby boy! Yet the most AMAZING thing about Brayton to me is the POWER he has! He has the power to make me or anyone else for that matter do pretty much anything he wants! Haha. But he also has the power of God pouring out of him at every point in his life. In his short 16 months, God has worked wonders through him. My son is God's messenger. Lives have been touched. People we have never met, send me facebook messages telling me how he has touched them. It is AMAZING!
So, I ask everyone to please, please pray what I have decided to call "Brayton's prayer"...simple words with A LOT of power! I KNOW that God has something amazing in store and that only HE can heal my sweet man! All it take is "a little improvement" at a time!
"GOD, PLEASE HEAL BRAYTON'S AIRWAY PERFECTLY AND COMPLETELY!"
Wednesday, July 25, 2012
Brayton's First Birthday
It is been a year since I gave birth to my sweet Brayton! As I sit and take time to reflect on everything that has happened, I find it hard to believe that we have gone through so much in such a short time!
God has truly blessed me and my family in so many ways! Life has become a precious thing to me. So has poop, baby sounds (ANY sound), first steps, and so many other small things that people take for granted. If things had been different and Brayton had never gotten sick, I think I would be like other parents wishing my kid would just shut up or complaining because he is running all over the place and breaking things. But because of what all has happend and knowing that Brayton was gone for a few seconds before he was revived, I try not to take a single thing for granted. I wish I knew what his voice was like...his cry...his laugh...I thought he was going to be behind on walking because he was in the hospital for 2 months, but at 10 months, he took his first steps and is now EVERYWHERE which I am loving! His smile never stops and each smile reminds me of how lucky I am to have him in my life!
Brayton is my HERO! I never thought a hero could come in baby form. I always thought it had to be someone older that you look up to, but my little son is every definition of a hero!
We have been through a lot and still have a long way to go! Brayton is 19lbs 4.5oz which means he is 3lbs away from surgery! :) Fear and Excitement come from this news! Fear of surgery and excitement of being trach-free! My little miracle has to keep on fighting! And I am certain that he will fight the whole way with.... a SMILE!!
God has truly blessed me and my family in so many ways! Life has become a precious thing to me. So has poop, baby sounds (ANY sound), first steps, and so many other small things that people take for granted. If things had been different and Brayton had never gotten sick, I think I would be like other parents wishing my kid would just shut up or complaining because he is running all over the place and breaking things. But because of what all has happend and knowing that Brayton was gone for a few seconds before he was revived, I try not to take a single thing for granted. I wish I knew what his voice was like...his cry...his laugh...I thought he was going to be behind on walking because he was in the hospital for 2 months, but at 10 months, he took his first steps and is now EVERYWHERE which I am loving! His smile never stops and each smile reminds me of how lucky I am to have him in my life!
Brayton is my HERO! I never thought a hero could come in baby form. I always thought it had to be someone older that you look up to, but my little son is every definition of a hero!
We have been through a lot and still have a long way to go! Brayton is 19lbs 4.5oz which means he is 3lbs away from surgery! :) Fear and Excitement come from this news! Fear of surgery and excitement of being trach-free! My little miracle has to keep on fighting! And I am certain that he will fight the whole way with.... a SMILE!!
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